Wednesday, December 28, 2011

INSERT EXPLETIVES HERE

We had a great Christmas. It was great to be with family. My aunt and uncle have taken us in as
their own, and Walker's parent's are basically have three daughter-in-laws now.

Ok, I also had an exhausting Christmas, providing physical care while drenched in feelings of resentment and sadness, mourning the absence of my mom, and continued selfish and embarrassing mourning of the the life I used to have and the life I thought I was going to have. I cried, a lot, and for a lot of reasons.

But we survived and I had a sad time, and a hard time, but also a good time.

The night before Amy went home, she pleaded with us not to send her back. She told us how they still weren't giving her coffee, were still giving her "bed baths", how a month after her glasses broke she still doesn't have new glasses, how [MeanyCold] recently accused Amy of kicking her (fyi: impossible). She sobbed and sobbed, and I felt sad for her and angry at her house, then sad for me and angry at her, in circles.

I told her, Amy, I'm handling stuff! It's going to be ok! What I don't tell her is that I'm lying -- to her and to myself. I'm handling stuff, but nothing changes.

Yesterday, I sad down and churned out my followup emails. I've been emailing Amy's QSP for a month and a half, but she NEVER emails back. I was starting to assume she'd been, so I forwarded all the messages to her boss -- the primary issues covered in those emails:

Amy has been without appropriate glasses for a month. I have been emailing for a month.

Amy wants coffee in the morning. 39 days, multiple emails from me. No response, no coffee.

Amy does not like "bed bath" and prefers showers. 39 days, multiple emails from me. No response, still "bed baths".

Amy is supposed to be having range of motion exercises done daily. This has never happened. Ten days ago, I send her new RX and directions for range of motion activities. No response, no exercises.

Amy is staying up till midnight on New Years; please alert staff. Ten days with no response.

And then there are the constant act of aggression from MeanyCold which have NEVER been responded to. I sent this email, following up on the BIG email a while back. You know, the one after I found out that MeanyCold is telling people that I called her a bitch and the n-word. If you don't remember, it's below, since I sent this message as a reply to that one.

Hello,Awaiting response and resolution on the issues in the email, as well as several other things previously addressed in emails to Amy's QSP. November 19: “There was a meeting in the house today, after which after which [MeanyCold] told Amy that she's ‘sick of being treated like a dog’ and ‘I don't like it when your family lies’ and that she wants to have a meeting about this.

This needs to stop. Elmwood is Amy's home. She should not be mistreated or antagonized in her home. Amy is not lying. Her family is not lying. Amy does not need to go to a meeting regarding this.”____November 20: “Last night, November 19, [MeanyCold] told Amy when it was that Amy had told [MeanyCold] that [FriendlyBigMouth] hit her. Amy assures me [FriendlyBigMouth] has never hit her and that she never said [FriendlyBigMouth] hit her. In any case, why would [MeanyCold] be bringing this up to Amy? We ask that people stop antagonizing Amy and making her feel uncomfortable in her home.”____December 18: “I emailed earlier this week to let you know that Amy would home late on Saturday.

When Amy got home last night, [MeanyCold] asked Amy why she got home so late and why she didn't call. Amy tried to call the house, over an over, at least four times, starting at 10 pm to tell [MeanyCold] when she would be home. She left two messages.

[MeanyCold] told Amy ‘I'm not gonna work here very long if this crap keeps going on’. She also told Amy she was rude. When Amy asked if her chair was plugged in, [MeanyCold] told her that had been, but that her sister had unplugged it, and she she wasn't going to plug it back in. One, we had plugged it back it. It came unplugged while we were taking pictures of the broken piece, then we plugged it back in. If she found the chair unplugged, it's because the cord fell out when she passed through Amy's doorway, since the cord was across the doorway. Two, it is completely inappropriate for her to set conditions for providing care to Amy. These things were upsetting Amy, and [MeanyCold] told Amy she would leave her in her chair if she didn't calm down.

Amy tells me she was not having a panic attack or screaming at that moment, was just upset at how she was being treated.

This has been going on a long time, and there has been no change. This has to stop. It is damaging to Amy and it is completely inappropriate for [MeanyCold] to act resentful towards Amy for having to do her job, or to threaten not to provide care to her. Elmwood is Amy's home. [MeanyCold] is an employee at Elmwood. Amy should not feel insecure about her care in her home.

Please let us know how this will be addressed.”____Also, a new issue, from last week, possibly Wednesday. [MeanyCold] and Amy were in her room, having just showered her, she was still in her toilet chair. Amy asked to go to the bathroom a second time after her shower. [MeanyCold] said “you should have told me before, you better go this time”. They went back in the bathroom, Amy went to the toilet, then told [MeanyCold] she was done. [MeanyCold] told her she had to wait. Amy was in a lot of pain, as she’d been in her upright toilet chair a long time and the strap was hurting her. Amy’s leg hit [MeanyCold] and [MeanyCold] accused her of kicking her. Obviously, this is not true. Amy has muscle spasms, all the time. Amy is not capable of kicking someone.

In
last week’s meeting, it was mentioned that staff found us to be very
rude in our communications, and then it was made somewhat clear that
they were specifically talking about me. I was shocked, since I am
nothing but polite when in the house, and while my emails are direct and
assertive, they are always professional. Then it was said that I had
yelled at [MeanyCold], which is a shocking mischaracterization of our
interactions.

I
have had two conversations with [MeanyCold]. One night, Amy called me
to tell me that she wasn’t allowed to watch TV at night and that
[MeanyCold] said she could only make one phone call a night. She was
really worked up and somehow I ended up on the phone with [MeanyCold],
who told me that she couldn’t speak for other staff, but that she didn’t
mind helping Amy with phone and TV. That was the extent of the call.
I previously emailed [Residential Director] about this on September 19, as 1) all staff
should be helping Amy with phone and TV as Amy needs help and 2) this
attitude is not ok – the idea that someone “doesn’t mind” helping her.
It is their job to provide Amy with support.

The
other conversation I had with [MeanyCold] was on October 15. Amy was
having a hard night. She called me crying and asked that I call the
house to alert [MeanyCold] she needed a white pill. I called
[MeanyCold] to tell her. She said she had to call the nurse, I said
that was fine, that it was just frustrating that Amy had to wait so long
for pills she desperately needed in order to feel better. I mentioned
that some nights before, Amy had requested a pill and gone to bed
without it. [MeanyCold] told me this was not true, that the nurse had
come and administered the pill after Amy had gone to bed. [MeanyCold]
told me how Amy was disrupting the house with her poor behavior and how
she treats Amy like a queen (her words). I explained to her that Amy’s
crying and anxiety weren’t an act of aggression towards anyone, but
rather part of her disability, which from our conversation, it was very
clear [MeanyCold] did know recognize. She said she was going to give
Amy a pill without calling the nurse.

Every
other time I have seem [MeanyCold] she has been quiet and sullen and we
haven’t had any conversations other than basic greetings, me handing
back clothes that aren’t Amy’s that I find in her room, her coming in to
do Amy’s face wipe while I’m hanging with Amy.

Tonight, November 13, Amy called me that [MeanyCold] told [FriendlyBigMouth] that I had called her a “bitch and a ni---r”. I
was obviously SHOCKED, and told Amy that that had never happened and
that it seemed like maybe she had misheard something because it seemed
so ridiculous and offensive, and obviously untrue. Amy put
[FriendlyBigMouth] on the phone who confirmed that indeed, [MeanyCold]
had said this about me. This never happened. I would NEVER say this to
anyone, would never say anything rude to anyone at the house. The fact
that [MeanyCold] is saying it happened confirms a lot of things for me
about how out of control this situation is.

[FriendlyBigMouth]
told me that [MeanyCold] had painted a very negative picture of me,
and was surprised to meet me and find I was nothing like what she had
been told, and now suspects much of what she is told is false.
[FriendlyBigMouth] has told me that she has an enjoyable time on the
evenings she works with [LovingGrandma], but the nights the works with
[MeanyCold] are unpleasant.

Also,
same day, Amy called to tell that [MeanyCold] would not let her take
her shower early and she was really upset. I told her that [MeanyCold]
had done nothing wrong, and the not wanting to shower her early was not
unreasonable. Later, when I talked to [FriendlyBigMouth] , this
situation was clarified – Amy told [FriendlyBigMouth] she needed to go
to the bathroom. [FriendlyBigMouth] said, hey I know it’s early, but
why not kill two birds with one stone and take your shower now? Amy
said sure. [FriendlyBigMouth] asked [MeanyCold] for help putting Amy
in her shower chair, and [MeanyCold] told her that she could not shower
Amy at this time, adding that sometimes when Amy takes her shower early
in the day, that then she lies about not having gotten a shower (Amy
does not lie, and staff keep claiming to never have called Amy a liar,
and yet…)

Additionally
on Sunday, [MeanyCold] told Amy that she is evil. Yes, she said “you
are evil”. She again told Amy she must clock out by ten and thus can’t
assist Amy with television watching past ten pm.

Saturday
night, [MeanyCold] asked Amy if [FriendlyBigMouth] had put her on the
toilet before she went home. Amy said no, and [MeanyCold] said
something like “this is the last time I’m gonna do it”.

The
other day, Friday I believe, [MeanyCold] brought up Monday’s meeting
and told Amy she didn’t attend because she had something personal to do,
but that she wanted to bring somethings up, such as the fact that Amy
doesn’t use her horn. This was inappropriate. No one should be
chastising Amy in her home.

Also
on Friday, Amy was talking to [FriendlyBigMouth] , and [MeanyCold] was
listening. Then [MeanyCold] told Amy that she was lying when she was
talking to [FriendlyBigMouth] . [MeanyCold] DOES call Amy a liar, and
routinely.

Recently
(possibly Oct 23), Amy and [FriendlyBigMouth] told me that [MeanyCold]
told [FriendlyBigMouth] that Amy had told another staff member that
[FriendlyBigMouth] had hit her. [FriendlyBigMouth] came to Amy with
this, as she was obviously upset over such an accusation.
[FriendlyBigMouth] never hit Amy. Amy never told anyone
[FriendlyBigMouth] hit her. We also spoke with Amy privately give her
the opportunity to tell us if such a thing had happened. It never
happened.

None of this is anything new, and it never stops.

Amy
is not a liar. Amy does not lie. I felt like we got at this in the
meeting and that it was clear -- Amy should never be accused of lying or
of not telling the truth.

Amy
also asked that I clarify, she at no time has called [Residential
Director] a bitch. She isn’t sure if she’s called [former House
Head/QSP] a bitch, but she knows she has never called [Residential
Director] a bitch. Additionally, Amy is entitled to say whatever she
wants in her home. It is the not the job of [Agency] staff to monitor
Amy’s verbalizations and reprimand her for them.

I
really concerned that what’s going to come out of this email is that
[FriendlyBigMouth] gets in trouble for sharing with us, and I ask you
not to have that happen. [FriendlyBigMouth] is the only window into
what is going on in that house. Something bad is happening, and
[MeanyCold] is not being honest. I feel very uncomfortable with her
continuing to provide care to Amy given her obvious willingness to lie
and apparent distaste for Amy and our family.

Sorry
to send such a heavy email, but its apparent me that the situation
being represented at Monday’s meeting remained, partly at least, hidden
from view and inaccurate. I went into that meeting very concerned about
the quality of care and attitude towards my sister from two staff
members in general, and after consideration I am still very concerned.
I very much appreciate that [former QSP] is no longer in contact with Amy,
but there is still a problem. [MeanyCold] is verbally and emotionally
abusing Amy, and she’s lying to staff to make more trouble. This is not
ok. It is apparent she does not wish to provide care to Amy.

Often,
when a care taker is disrespectful or cold toward a person with greater
disability, it goes unnoticed, as the person does not report it, or is
unable to report it. Thankfully, Amy is able to report her poor
treatment. Rather than Amy being looked at a trouble maker, I would
suggest that this is actually a great moment to examine the
care-mentality of employees and examine whether they really should be
trusted to care for vulnerable people.

Amy's new QSP finally repsonded to emails, suggesting another worthless meeting, where they will no doubt tell us that 1) none of this ever happened, 2) that Amy is is just misunderstanding, 3) that Amy is the problem, not them, 4) that no one has ever called Amy is a liar, and if she says that they did, then she's LYING, and 5) that maybe we just have too high of expectations and that not everyone (referring to Meany Cold) can be as sweet and warm as EVERY OTHER CARETAKER IN THE HOME:

Amy annual
IP is approaching in January 2012, I will like to set a date for Amy
annual meeting. This meeting will talk about Amy goals and progress in
each section. We will also discuss any concerns or issues anyone may
have. This meeting is all about Amy and she can talk to us as a Team
about living at Elmwood now goals she will like to work on and etc.
Please send me an email for a date in January so we all can meet, if we
can meet before the 12th that would be great. Please confirm.

Thanks

[New QSP]

My response:

Walker and I live three hours away, and we and Annie all have full-time jobs with limited days off. We’d like to make sure that if and when
we have a meeting again that it is productive

I propose that before setting a meeting date or meeting that [organization] staff meet and identify any changes they’d like to make to Amy’s current IP. Please share Amy’s current IP, proposed
changes, and intent of IP’s with Amy and with us. We will then work with Amy to develop our
proposed changes. We can communicate
back and forth until we have something hashed out, and then we can set a time
to meet and talk about this plan, if needed.

When we do meet, we ask that direct staff not be present. Amy is reluctant to speak openly in the presence
of the people she relies upon for her day to day care.

The issues raised in past emails need to be addressed separately,
and not confused with Amy’s IP meeting.

On Amy's glasses, which have been broken for A MONTH. "I
talked with Wheaton Eye Clinic concerning Amy’s broken frames.
They informed me that she(we or I) can come in between the hours of
8am-3pm and there department will be able to look at them and repair the
glasses. However there will be a fee for new frames billing up to
$200.00 depending on if she needs new frames or can they can place her
old len in a new frame. Please let me know what you would like for me to do as the payment will be do upon services!!!" Response: "Amy is her own guardian. She can either pay the 200 dollars herself, or
if she doesn't have the funds, she should be taken to somewhere that
does accept her insurance and will provide frames and lenses. I don't
know the details -- either my mom or [organization] had handled this in the past --
but I'm pretty sure she only goes to the doctor at the wheaton eye
clinic and that she has gotten her glasses for free in the past from
somewhere that did accept her insurance, as her and my mother had no
income."

On New Years Eve: "I
am unsure of how to respond to this email as the staff at the house is
to clock out by 10pm. I will inform my boss of your wishes for New
Year’s Eve and inform you on the arrangements we have discussed asap." My response: "When we've raised this issue in the past -- that Amy was under the
impression from conversation with some staff members that she needs to
be home in time for them to clock out by ten, and that they can't assist
her after ten -- and been told again and again that this is not the
case, that if Amy needs care after ten pm then staff clock back in, and
that Amy will be cared for at the house whenever she needs care."

On Amy's medical bills, which they keep giving to me. I have not finacial responsbility for Amy, so this is odd to me: "I
have received the bills for Amy and will go over them with [Residential Director]
asap! I will inform you on what the family or [organization] is to do with the
bills."

No response to any of the abuse Amy is experiencing at the hands of MeanyCold

No response on range of motion

At this point, I am also forwarding all messages to the vice president of the agency. I've also filed another complaint with the Office of the Inspector General in the Department of Human Services.

If it seems like I'm losing my mind, it is because I am. I am exhausted. I want to spend my life improving Amy's life in REAL WAYS, not dealing with constant bullshit.